3.2.2 Building independence
Understanding CF
All participants acknowledged that children need general disease knowledge about CF to build their independence in self-management and overall treatment adherence. Parents and HCPs highlighted the importance of children understanding the rationale for completing treatments. Parents explained that the lack of tangible reward for completing treatments makes it difficult for children to understand the importance of maintaining consistent treatment routines. Education surrounding the long-term benefits of completing treatments was highlighted as being important in motivating children to consistently self-manage their CF.
One challenging aspect of learning about CF reported was life expectancy.
Parents and HCPs differed in their opinions on how much information should be revealed to children about CF. Many parents described worrying about how their child would find out about sensitive issues related to having CF, such as disease prognosis. Parents emphasized the importance of delivering this information in a developmentally appropriate way, however they expressed uncertainty about what age is appropriate to begin having these discussions. HCPs described how some parents limit the amount of information they provide to children regarding life expectancy to protect them. While the latter was interpreted as a strategy employed to protect their children, HCPs perceived that censoring information is unhelpful in the long-term.
Mechanisms of learning
Participants described how children learn to manage CF. Parents were described as the primary source to help their children learn about CF and how to manage it. Parents’ knowledge of treatments and openness to encouraging their child to self-manage their CF was discussed as being important in learning about CF and building independence. HCPs also contribute to CF learning and discussed directing conversations toward and obtaining information from children during CF clinics in order to allow children to advocate for themselves. Using this strategy encourages children to become more comfortable reporting their health status independently, and allows them to clarify their beliefs and feelings that may not be represented in their parents’ reports.
Increasing responsibility
Increasing the ownership of the child in self-managing their CF over time was described by participants as critical. Parental beliefs were identified as a factor that could prevent children from learning to be independent in managing their own care. Parents and HCPs explained that it can be difficult for parents to let go of control of managing their child’s treatments. Some parents indicated that it can be more efficient to complete a task for their child rather than watching them fail; other parents highlighted the importance of letting their child fail as a mechanism to facilitate independence. HCPs noted that having parents solely complete treatments for their child may be detrimental to their child’s ability to self-manage their CF in the future. Child self-management of CF was believed to contribute to their overall self-confidence.
Some children felt that the abundance of disease information and the number of treatments required to complete when combined with other life activities (e.g., school, friendships) can be overwhelming. Attentional difficulties (e.g., Attention-Deficit Hyperactivity Disorder) were identified as a barrier to managing treatments independently (e.g., remembering to take medication). Parents highlighted the role of mental health in a child’s ability to manage CF independently (e.g., treatment adherence was poorer when their child experienced low mood).
Coping
Focusing on positives
Participants described children coping with their CF by focusing on positive aspects of their lives. Understanding that they may be able to access effective treatments if their condition worsens was described as helpful in coping with the uncertainty of their disease progression. Other positive aspects identified included participating in fundraising initiatives and becoming a leader in the CF community.
Learning to cope from others
Participants reported that sharing with others and learning how to cope from other people is helpful. Children described talking with their parents about feelings associated with CF as a coping strategy. Parents highlighted the importance of creating an open environment and encouraging children to share how they are feeling. Parental modelling of helpful coping skills was discussed as being important to promote the use of helpful coping strategies in their children. HCPs emphasized the pivotal role that parents play in teaching their children about emotions and effective coping during difficult situations. Children added that it is helpful to know there are other people with CF who have similar experiences.
Bridging gaps in services
Services needed
Participants reported that the current major focus is the physical aspects of CF within care, while mental health care is not prioritized. Some HCPs described mental health care for children with CF as being reactive instead of preventative and how mental health services are not accessed until there is a crisis. Participants stressed that children with CF need opportunities to access mental health care consistently. Additionally, participants highlighted the importance of offering mental health services to other family members, such as parents and siblings of children with CF.
Barriers to access
Barriers to accessing mental health services included financial barriers, the time-consuming nature of attending appointments, long waitlists, and travel to access services for families living in rural areas. HCPs added that parental beliefs about stigma associated with receiving mental services may prevent children from accessing the services that they need. Education surrounding mental health care and normalizing the experience of seeking out mental services was believed to be important in eliminating stigma as a barrier for accessing services.
Informing a novel form of service delivery
All participants expressed interest in an Internet-delivered mental health prevention program for children with CF. Participants emphasized the importance of children learning appropriate coping skills early to promote well-being. Potential drawbacks to this type of service delivery included safety concerns regarding Internet use and access to the Internet. Program usage or uptake could be impacted by time commitment required and HCP monitoring.
Finally, participants suggested components to be included in an Internet-delivered mental health program include education about CF and CF treatment, physical and mental health, emotions experienced by children with CF, coping strategies, how to access mental health services, and social support provision. Interactive aspects (e.g., interactive vignettes) and short modules to accommodate attention difficulties were also recommended.